When our kids were little-r we used to speak in code, and it was easy. We have four kids and each child received a number. That code has changed and adapted as they’ve gotten older. Sometimes, I’m so good at speaking in code that my husband literally has no idea what I’m talking about. But as adults, our time to visit without children present is minimal. So, we have to be creative, or at least that’s what I tell my husband when he gives me his, “What are you talking about?” look.
Our number 2 is an incredible kid. He’s smart, sarcastic, hilarious and a stuffer of emotions. I remember being in the hospital in South Dakota and my parents bringing our oldest son to meet his new baby brother. It’s a sweet moment that forever lives in every mother’s heart.
At birth, number two became part of an autism family. Starting at age 1, I would drag him to IEP meetings for his brother while he quietly munched snacks, patiently waiting for our focus to turn to him. Number two had a significant amount of respiratory issues his first couple years of life. Lining up childcare for our oldest son, while number 2 was hospitalized was always difficult. Trying not to tax family members too much and trying to train friends around you on how to care for your atypical child was always a balance.
Every person with autism has sensory struggles. Seeking and avoiding. For our son with autism, smell has always been a big deal. He loves to smell anything familiar and doesn’t like any sort of change in smell. His favorite thing to smell for YEARS was his brother. Whenever he would get stressed out, a few moments with his nose to his brother’s hand was all he needed to help regulate him. For the most part, this was ‘normal’ in our home. I’ve found that I often forget things that are normal in our home are actually not. This is pointed out when people visit. I remember family members, all well-meaning, asking why he smells things and why his brothers hand? And when will this stop? I didn’t know how to answer those questions because I didn’t know why our son did those things.
As number 2 got older, he recognized his brother’s atypical need to smell his hand. For the most part, he was accommodating. Though, sometimes he would negotiate something for himself. I let you smell my hand, you let me play with a certain toy. Often number two would be woke up in the middle of the night because his brother had a nightmare and needed to smell his hand or he couldn’t fall asleep unless he was smelling it. Yes. We did end up having to phase out the hand smelling.
Having a brother with autism may be number 2’s normal. But that doesn’t come without frustrations or without the realization that life is hard. Maybe harder for him than some of his peers.
A couple weeks ago our oldest son had a meltdown. Meltdowns have a spectrum to them, too. Some are worse than others. Sometimes when our son has a meltdown, the entire day for everyone in our home is ruined. It happens and it’s just life. This particular meltdown was rough. My husband was at a meeting, which isn’t uncommon. I had already tucked the girls in and they were, thankfully, fast asleep. Number 2 could hear and was unfortunately able to see much of this meltdown. It lasted hours, ending just after 11pm. That’s a late bedtime for a 5th grader without piling on the emotional toll it takes to hear and see his brother’s continual struggle.
The next morning is school. I feel beat up because meltdowns are emotionally and often physically draining for parents of children with autism. But I also feel sad. Sad for my 11-year-old, who got up with far less sleep than he needed. Sad for the kid who has to and has learned how to muscle through his day regardless of what the night before looked like. I wonder if it’s worth a quick email to his teacher, but in the end, decide to let him handle his day like the mature 11-year-old he is.
Number 2 has played youth football the last three years. It’s been great for him to get out of his comfort zone and meet new people. For a few months, almost every Saturday, our family loads into our minivan and goes to a game in support of our 2nd son. This is no small undertaking. Really, this is a big task for any family of 6, I assume. We make sure we have snacks, we make sure there are electronic devices charged. We look for the ear muffs that will cancel the most noise. All for one beloved member of our family.
We’ve gotten pretty good at managing our schedule and manipulating our environments to accommodate as best we can for our son. Some may call this enabling, we call it trying to survive, one day at a time. But nothing can prepare him for a bullhorn at a youth football game. Ironically, the same football game that our son ran the ball for the first time. A bittersweet day, an unexpected bullhorn followed by a forever memory for number 2.
We try to celebrate accomplishments for number 2. We try to praise him and reward him. And we still have to discipline him because he’s still far from perfect. He has to wrestle with why he is disciplined for behavior that his older autistic brother isn’t disciplined for. We have to teach him Romans 8:32, He who did not spare his own Son, but gave him up for us all, how will he not also with him graciously give us all things? We have to teach him that all things includes hard things. We have to teach him that his brother is fearfully and wonderfully made and created in the image of God. We have to teach him that the parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. We have to teach him that he is to love his brother as what is laid out so poetically as 1st Corinthians 13.
All this to say, when you see a kid sluggish at school, or maybe you see a kid who isn’t giving 100% at practice. Maybe be slow to jump to conclusions. Or when you know a kid who has a sibling with a disability, extend an extra measure of kindness to them. Be gracious. They may still be waiting for the focus to turn to them …
Light & momentary 